ive been taken off my lenalidomide treatment and soon to start belantamab regime reading the associated booklet is very scary anyone with any insights
Hi tansbelland a warm welcome to this corner of the Community although I am sorry to see you joining us.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I have been on my cancer journey for over 26 years first diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting….. I also have Asbestos and just recently been diagnosed with Prostate Cancer so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
From my long experience having had over 750hrs of chemo plus other targeted treatments the information booklets I was given were challenging, even scary but we could line up 20 people with the same blood cancer who are on the same treatment and get 20 different stories….. my main chemo/targeted treatment back in late 2013 to April 2014 was very aggressive but I did not have more than 10% of all the directs that were noted on the info and even then they were mild and do-able……. so I do hope that this us your experience as well.
There are a few active members in the group at the moment so let’s look for them to pick up on your post.
For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.
Always around to help more or just to chat.
